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Stephanie asked...

Ehlers-Danlos Syndrome

I am only 30 and since I was 15 I have been in and out of the same hospital with the same problem involving my intestines and because I wasn't tested for anything or given a second opinion until it was too late and it turned out I have EDS now I am left with my small intestine burst through the scar tissue there is no way of getting a bag over it so I'm leaking fluid that burns my skin every day my life is destroyed and I keep trying to get some help but I'm getting no where please help?

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The answer

Wound healing is a known issue with Ehlers-Danlos Syndrome, often delayed by weeks or months. From what you are describing we are guessing you have developed a small bowel fistula draining onto the abdomen.

Fluid from the small bowel is high in acid content so is corrosive and damaging to the skin and a skin barrier will need to be used. There are multiple drainage bags available, small and very large, that can be used and adapted for dressing/covering actively draining wounds and some are adapted from stoma (colostomy) use.

You have not said if you are at home or still in hospital. If you are at home we would suggest district nurse involvement, if they are not already involved, they are specialists in wound care management and also referral to a Tissue Viability Nurse and we would also suggest referral to a stoma nurse.

They can look at ways to protect the skin from further damage from the drainage and help with obtaining a good fit with the drainage bag to minimize skin irritation. If you are still in hospital we would ask to be seen by tissue viability team and the stoma nurse for their assessment of the wound and their ideas/input.

Answered by the Health at Hand nurses

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